Secondhand Autism by Paul Brodie, ebook 2013

Excerpts from the book – (5% indicates location in the Kindle version of the book, instead of page numbers).

< Excerpts from Paul Brodie’s Introduction >

5% This is my experience and understanding of a major influencing aspect of my life, through my own lens of perspective, presented as such.

Secondhand autism, as a phrase, incorporates the negative connotation of secondhand smoke with my struggle in relating to autism and represents my experience, personal and observed, with what autism does to the family members of the individual with the diagnosis.

3% Secondhand autism, just like autism itself, is a unique condition, sometimes at odds with itself. Although autism is unique to an individual the effects reach parents and siblings without prejudice.

< My Thoughts > “…what autism does to the family members.”

Green (2013) says “a child with autism within a family unit presents a unique set of circumstances for the siblings to navigate. A lot depends on whether or not there is a strong family system. Autism is frustrating and siblings are sometimes affected in either a positive or negative way.”

< Excerpts from Paul Brodie’s book >

23% Scott could not be autistic on his own. Our family has all been autistic with him.

15% Autism in my family – Scott was just about 3 years old when my parents first took him to a doctor with questions about his development. He was on track for the standard age-graded stages of development – crawling, walking, and talking, etc. – until he seemed to regress, starting between 18 and 24 months. Scott is the fourth of my parents’ six children: Laura, me (Paul), John, Scott, Alison, and Shannon. Alison was born around the time when Scott’s abnormal behavior started making my parents worry.

Initially Scott’s change in development was thought to be a reaction to my sister Alison’s birth.

< My Thoughts > “Scott’s change in development (regression)…”

There is a study by Goin-Kochel & Myers (2005), questioning parents’ beliefs about the causes of their child’s regression. The results were three-fold. One, the belief was ‘genetic causes’; two, the belief was ‘external triggers’, and three, the belief was a ‘combination of both’ genetic and external.

In this 2005 study, participants were asked to share their views on what possible ‘genetic factors’ might be relevant to their autism. Some of the factors cited by parents were – “I think he always had autism.” “She was extremely hyperactive and hyper focused and became very demanding…” “My grandmother has similar symptoms, but was never diagnosed.” “My husband’s father is socially odd.”

‘External factors’ cited by participating parents in the 2005 study were – “I think that his digestive system may have been immature and that he may have had casein allergies which contributed to the heavy metal build up from his vaccines. He experienced major regression immediately following his vaccinations (DPT) & (MMR).”

Participants In this 2005 study shared their thoughts about ‘both the genetic and external factors’ they felt were involved. Ideas cited by parents were – My son was “genetically predisposed and all the autistic symptoms were aggravated by mercury in vaccines and other environmental injuries.” “I think people are genetically predisposed and then something, probably prenatal, triggers the changes in brain structure that characterizes autism.” “I honestly do not know. Maybe vaccinations, maybe gene combo, maybe I ate too much tuna.”

In addition, one parent participant in the 2005 study cited under: ‘Other factors’ – “I think for my child it may have been trauma at birth, or, the result of having two caregivers, each with very different approaches, one too strict and one to permissive.”

58% I hate autism because, in my limited perspective, it seems to prevent Scott from having and experiencing things that I think he should get to have; things that I have experienced and am grateful for.

< My Thoughts > “I hate autism…”

Orsmond & Seltzer (2007), “The life-stage of the sibling and the life-stage of the individual with autism, influences the companionship and caregiving experience,” and the sibling’s feelings about autism.

Sicile-Kira (2014), “Some of the behaviors exhibited by children with ASD would be typical of a younger child’s behavior. But it is harder for a sibling as time goes on and the behaviors continue, or are replaced with even more ‘interesting’ ones,” even when the child becomes an ‘adult-child’.

61% Essentially, we were Scott’s caregivers along with our parents. In a way our sibling role was associated with a co-worker role, and in some ways a parent role.

< My Thoughts > “…we were Scott’s caregivers along with our parents.”

Orsmond & Seltzer (2007), tell us that parents and siblings often share the ‘companionship and the caregiving’ of the family member with autism. That the more positive or negative effects of these relationships depends largely upon the maturity and coping strategies of the people involved, as well as the degree of disability. They also indicate that a same gender connection may be important with siblings, but that there hasn’t been much research on ‘mother-child versus father-child’ relationships.

62% We engaged in sibling rivalries as younger children, but I don’t remember much of that past elementary school for myself. Laura and John and I might have just naturally grown out of it by that point, but that was also the time when Scott was diagnosed with autism.

< My Thoughts > “We engaged in sibling rivalries…”

“Siblings of individuals with autism have been reported to have less conflict in the sibling relationship and more family resilience and increased self- perceived competence. In general, they show a more positive opinion of the sibling relationship, Green (2013) points out.

62% I know the responsibilities that came with caring for our brother accelerated our maturation in some regards; I think one of those ways was in how we related to each other. Shannon and Alison have both experienced what it is like to ‘out-develop’ an older sibling.

< My Thoughts > “…caring for our brother accelerated our maturation…”

Smith & Elder (2010), found that was “Greater admiration and less quarreling behavior among siblings, which allowed them to thrive.” That this sort of “sibling adaptation was necessary for sibling maturity and that both genders adjust better if older than affected sibling.”

74% Laura (33 years)I was ten when we started to notice behavior changes, like taking poop out of his diaper and smearing it on the wall. I remember his losing his verbal ability. He actually stopped using words… It was really weird. I remember distinctly going to the hospital to visit Mom when Alison was born, so Scott was almost 25 months old … and he freaked out.

For the next several years, it was like having two babies. I felt more like a third parent than a child. Scott even called me Mommy for awhile.

Although my memories of that time are fuzzy… I remember often thinking back then that Mom and Dad changed when Scott was diagnosed. They weren’t as happy and carefree as they previously had been. There was a new sadness and seriousness about them.

< My Thoughts > “There was a new sadness and seriousness about them.”

“Parent stress,” according to Thompson (2012), can drive an emotional wedge between parents.”

75% I remember how someone was always on ‘Scott duty’ when we went out. It usually meant actually holding on to him…so he wouldn’t just run off.

< My Thoughts > “… holding on to him… so he wouldn’t just run off.”

Children with autism often feel compelled to flee from their environment. The situation or setting doesn’t seem to matter; they just take off to parts unknown. Now we parents can take some comfort in knowing that there will be a new law put in place. We will have Avonte’s Law Act of 2015, which was named after the missing Queens, N.Y. teen who was found dead, days after slipping unnoticed out of his special education school and off the school grounds into the nearby neighborhood where foul play took place.

This law amends the Omnibus Crime Control and Safe Streets Act of 1968 to authorize the Attorney General to make grants to law enforcement agencies to: (1) reduce the risk of injury and deaths relating to the wandering characteristics of some individuals with autism and other disabilities, and (2) safeguard the well-being of individuals with disabilities during interactions with law enforcement. This law was proposed by Senator Chuck Schumer and introduced in the Senate on January 13, 2015.

76% I’ve found myself watching my own young toddlers closely for any signs of autism-like behavior.

< My Thoughts > “…watching my own young toddlers for any signs of autism-like behavior.”

Many of the autistic behaviors we see in children with autism are those behaviors from an earlier developmental stage. It’s when your child doesn’t replace the behavior with a more age appropriate one that it becomes a red flag.

77% My parents, siblings, and I have had difficult experiences due to Scott’s autism, but those experiences have brought us closer to one another as we have relied on each other for support and have served Scott together. I hope my small acts of service for Scott have made his life better, too. I love my brother!

< My Thoughts > “…my small acts of service…”

Sicile-Kira (2014), “The older sister may well feel responsible for a younger sibling with ASD and try to mother or take care of him.”

77% Paul (Me, 31 years) I was six and a half when Scott was born, which made me nine when he was diagnosed with PDD-NOS. I remember getting picked up from elementary school by my dad one afternoon. He told us about Scott’s diagnosis. That is all I recall from the moment, just a few frames in my mind. I don’t know if that was for the PDD-NOS diagnosis or for autism two years later.

< My Thoughts > “He told us about Scott’s diagnosis.”

Harris & Glasberg (2003), “siblings require someone to listen, respond to individual needs and communicate accurate information about autism appropriate to their developmental stage.” They also need to have it explained to them that there are “unknown challenges ahead awaiting the family of a child with autism.”

78% Another early memory was at school standing in line with my best friend, Jeff… I recall telling him that my brother was autistic. He said something to the effect of, “That’s cool, so he can draw really well or something?” I said, “Autistic, not artistic.” And this began my life of trying to understand autism and explain it to others.

79% …Being in public was extremely difficult for me because I had irrational thoughts and fears of attention. This made it extremely difficult for me to take Scott anywhere, just me and him, or to be with him at all in public as he often invited attention. My anxiety would engage and though I know the attention was on him, in the moment I couldn’t think like that and I would be painfully uncomfortable.

Thankfully, I’ve been able to work through the anxiety pretty well for myself, but even now, at 31…I still feel anxious thinking about taking Scott somewhere by myself.

Green (2013), “Siblings experience empathy, sympathy, fear, anxiety, and social isolation. They also become frightened of the child’s abnormal behavior, but this is usually overcome by a strong sense of responsibility and feeling obligated to help their parents, and to protect the individual with autism.”

80% I still have moments of worry and obsession which I attribute to living with autism, but for my parents it is constant. I worry about the effect of Scott’s autism my parents’ health – autism isn’t communicable, but it does have collateral damage.

< My Thoughts > “the effect of Scott’s autism my parents’ health.”

Miranda (2015), “Deterioration in parental health can occur due to stress and lack of emotional support.” “Sadness and discontent can drain parents of energy and make them question their parental abilities.”

81% One of the worries that lie dormant in my mind, surfacing briefly every now and then, is that my children will be autistic. My daughter Megan is just under a year old and she often bites her hand in the same way Scott does – between the thumb and index finger. But only briefly and quickly moves her hand around to suck on her fingers … or to move her hand in and out of her mouth manipulating the sound of her singing. Every time her hand is in that position in her mouth I think about Scott and worry that Megan will be autistic.

< My Thoughts > “I think about Scott and worry that Megan will be autistic.”

Because autism rates have increased greatly, over the last 15 years, many siblings worry that it may show up in their offspring. In a very recent lab study, discussed in the May 2015 edition of the Medical Laboratory Observer, a research team from Johns Hopkins “compared the gene sequences of autistic members of 13 families to the gene sequences of people from a public database. They found four potential culprit genes and focused on one protein, CTNND2.” They believe this protein plays a key role in infant brain development.

83% Between my own experiences with anxiety and my firsthand exposure to autism … I was drawn towards psychology. I found I really enjoyed learning about how the body works, especially the brain. I learned a lot that helped me to understand autism and life influenced by it.

87% My biggest hope is that autism will be cured. My greatest despair is that it won’t happen time for my brother or my child.

92% I believe that whatever the origin of autism, something effects the development of the brain at critical moments. But it is strictly ‘sometimes’ and in ‘some cases’.

Secondhand autism is not terminal. Autism does not typically include any shortened life expectancy, nor does secondhand autism. But, autism is for life. Secondhand autism is less about the physical effects on the family members than the emotional and personality effects.

< My Thoughts > “Secondhand autism is less about the physical effects on the family members than the emotional and personality effects.”

Sicile-Kira (2014), agree that “No matter how bad the situation, there is always a solution. And mainly it is the parent attitude that will make the difference.”

68% John (29 years)Having a little brother with severe autism has made me more conscientious and able to understand people better. I say this because I had to learn to communicate with Scott in ways other than normal verbal communication. He has learned a few words in his life that he can speak and sometimes he can express a few thoughts via typing or writing.

< My Thoughts > “has made me more conscientious and able to understand people better.”

Laura Green’s paper (2013), concludes that while most studies are based on families is crisis, there is ‘qualitative data’ that represents those sibling of children with ASD, “who are well adjusted and happy adults.”

69% I never put much thought into it before, but now I can see that Scott communicated with me through body language, eye contact and even past experience.

When I say ‘body language’ the first thing that comes to mind is how he would get very frustrated and bite his hand and jump up and down as he made different loud noises. He bit his hand so hard that it developed a callus.

Ironically he used some of the same body language when he was excited, by jumping up and down and making loud sounds.

< My Thoughts > “Ironically he used some of the same body language when he was excited, by jumping up and down and making loud sounds.”

Some parents need extra hyper-vigilance for this very reason. One learns the difference between a happy tantrum and a not so happy tantrum. Our non-verbal son was ‘in trouble’ for either kind, in the classroom, unfortunately. I say unfortunately, because he was just using the same communication for both emotions, making it confusing for others. But it was an economy of language-communication, from his perspective, I suppose. Whatever works!

69% Eye contact can be rare or empty with autistic children. Sometimes it was just him telling me he was frustrated or angry. Other times it was much more spiritual and I felt like he was searching my soul with his gaze. I always felt like I had a special connection with Scott, more than by other siblings.

< My Thoughts > “I felt like he was searching my soul with his gaze.”

As noted before in the piece by Barry & Singer (2001), children with autism can be taught to interpret facial expressions and emotions by reading another’s eye-gaze.

70% I knew most of what he liked and didn’t like. He really liked going outside to jump on the trampoline…so I knew what pleased him and where to go and what he was going to do when he got there. And, he was pretty obvious in his discontent.

I never had my dog eat my homework, but I did have Scott rip it up or write all over it a few times.

71% Being a father of two sons now I have thought of what a different life we will have if either ends up being autistic. We have greatly enjoyed watching our toddler learn and grow and develop. To think that all of that development and progression would basically stop and my son could be 2-years-old for his whole life is a sobering thought.

< My Thoughts > “To think that all of that development and progression would basically stop and my son could be 2-years-old for his whole life is a sobering thought.”

I can remember hearing a young mother watching children playing in the park and saying… “He/she is sooooo cute…don’t you just wish we could freeze them at this stage…Ha…ha…ha.” Whoa! We now call those children autistic. Not so desirable or funny anymore.

71% This has influenced our decision to delay vaccinations until our sons are older than 2-years-old. …we feel like there is a link to vaccinations and developmental disorders; and if not the cause of autism, at least not worth the risk of SIDS (Sudden Infant Death Syndrome). And that whole debate over autism and vaccinations has been very polarizing and political. Whichever way people believe is the truth they should at least be able to talk about the issue in an open manner.

< My Thoughts > “And that whole debate over autism and vaccinations has been very polarizing and political.”

This is a double-edge sword because many public school or state funded programs will not allow your child into their programs without the ‘proper’ vaccinations.

73% I am sure that my brother was picked on in school…I just hoped that there were other kids like me around to stand up for them. I also hoped that the school administration would supervise the students and protect the handicapped children better.

I love my brother and am grateful for having him in my life…I try to keep a positive outlook on my family’s life with Scott.

65% Alison(23 years )I am never embarrassed at anything anymore since doing theatre; but put me in a store with Scott and my stress hits a peak and I think about it all day and I feel bad for Scott.

There’s definitely a lot of guilt felt by all of us. We all feel guilty going off with our own lives while Scott just sits at home on an iPod watching movies, but that is what he is comfortable with, that’s what he wants to do. Whenever we take him out of the house, Scott gets agitated and asks to go home.

< My Thoughts > “We all feel guilty…”

Orsmond & Seltzer (2007), say some of the reported negative aspects of sibling relationships are provoked feelings of anger when child with ASD is aggressive. Along with having feelings of guilt for not helping the parents more or wishing for more of the parent’s attention.

66% I took Scott out a lot to restaurants and stores and it was very stressful for me to even be in the car with him because I was afraid he would jump out of the car randomly (which he has done a few times). Some days, he wants to go do something, but most days he wants to say inside.

I would get upset that Mom and Dad couldn’t go places together. I wanted them to come together when they saw my shows. Having them come separately made me feel like I wasn’t first priority.

67% Every child needs to think they are their parent’s first priority once in awhile, I think. With Scott, every one of us knew he was first priority, and we would never be able to feel like we came first… I think it makes you a better person in some ways.

< My Thoughts > “I think it makes you a better person in some ways.”

“On the positive side, many siblings develop a maturity and sense of responsibility greater than that of their peers, take pride in the accomplishments of their brother or sister, and develop a strong sense of loyalty.” Sicile-Kira (2014).

67% One time…Scott seemed agitated and wanted something from the fridge. I walked by and saw so I stopped to open it for him. I was having difficulty with the combination lock… so he suddenly pushed me towards the fridge, really hard. I think that was the moment I realized Scott had the temper of a toddler, but the strength of a man…

< My Thoughts > “I realized Scott had the temper of a toddler, but the strength of a man…”

Green (2013), “Siblings eventually develop awareness that the individual with ASD is often unable to control their behavior, resulting in some forbearance on the part of the sibling.” Eventually they realize that they are unable to control an unwanted behavior…” Resulting in the sibling feeling unsafe and anxious when left alone with them.

68% Although he cannot be cured, he does have the skills to communicate better. He used to read one of his picture books all the way through out loud by himself. That went away.

64% Shannon(14 years)I think the first time I really realized there was something wrong with Scott was when I was around 8 years old, when I started having friends over for longer than a few hours. I had to train my friends not to leave valuable things around the house because Scott might get to it or move it somewhere unsafe.

< My Thoughts > “…my friends …”

According to Orsmond & Seltzer (2007), many siblings “reported feeling lonely and that they had no friends.” And, those with friends reported “they were unable to explain autism to someone outside the family.”

“And, how can a sibling feel comfortable inviting friends over, knowing her older brother with ASD may come running down the stairs with no clothes on at any moment?”, Sicile-Kira (2014).

64% They would ask me why our refrigerator had a lock on it and why we kept all the doors locked at all times. Before my friends started questioning me, I always thought it was a normal thing to have everything locked at all times, nothing strange.

When Scott got out of the house multiple times, I didn’t like how upset Mom got. I guess that’s why whenever we went out I would pay close attention to Scott, because I was afraid Mom would be upset if he got away.

< My Thoughts > “Scott got out of the house multiple times…”

“All the training, home alarm systems and other supports that can be put into place to keep a child who is prone to elopement safe are not foolproof. Bolting, running, or wandering is common among the autism population,” according to Autism Speaks.

65% I remember it being hard for Mom and Dad to plan things because they had to take turns going to school or church events.

When I was younger than 8, I remember being afraid of Scott, not really afraid that he would hurt me or anything like that, he was just different than all of my other brothers and sisters.

< My Thoughts > “…he was just different…”

“…many younger siblings wonder if their brother or sister will get better or not.” Sicile-Kira (2014).

65% Scott never calls me by name; he only ever calls me Baby. I don’t mind it, I think it’s funny. I guess he only remembers me as a baby and got used to that.

< My Thoughts > “…he only ever calls me Baby.”

Scott and Shannon seemed to function very well within the family unit. Usually, younger siblings of persons with autism may become the brunt of that child’s aggression because the infant is seen as an intruder into the well-defined world of the autistic.

Barry & Singer (2001), found many families in crisis because of the autistic child’s aggressive behaviors towards the infant. These families solved the problem by finding a program designed for retraining the child to learn appropriate replacement skills. “The child learned to interact with his infant brother in new ways. As the child’s aggressive behavior was reduced, the parents allowed him more access to the infant.” “As the sibling relationship develops, there is ‘continued intervention’ provided and more complicated skills will be taught.”

(End excerpts from Sibling Notes)

93% Secondhand autism does not exist. It is simply a term to refer to the emotional and personality effects that autism has on a family member of an autistic person.

< My Thoughts > Sibling relationships…

Harris & Glasberg (2003), “Sibling relationships endure long after other friendships are lost, and parents die, but sibling relationships continue into old age.”

< End excerpts from Secondhand Autism >

< My Thoughts >

This insightful account of their family’s sharing of what becomes their definitive truth that the whole family was impacted by secondhand autism, was especially powerful to me. Each page has valuable information on it. My excerpts have only given you a brief view into this world.